What’s the One Genetic Test I Would Recommend to Most People?
This article was written by and shared with permission from Shannon Wieloch, MS. Shannon is a certified genetic counselor and patient advocate for the Aicardi-Goutiere Syndrome
JumpStart
JumpStart
The Orphan Disease Center’s JumpStart program serves to establish and progress research agendas in emerging and neglected rare diseases. The JumpStart program partners with patient groups and families to address gaps by identifying key opinion leaders and introducing new researchers to a disease. The program can help facilitate the development of animal models, establish a patient alliance or a patient registry, and organize symposia. Due to limited resources, ODC is unable to provide financial support. JumpStart primarily offers scientific advisement and network outreach.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
- Emerging and neglected rare diseases
Resources & Support
Patient Worthy Posts on Rare Disease
Breaking Barriers: Celebrating the Inclusion of Disabled Athletes in the Drive for Diversity
In an exciting and heartwarming shift towards inclusivity, the world of sports is embracing a new era of diversity—one where disabled athletes are not only
The Value of Genetic Counselors: Why Their Role is Essential in Healthcare
This article was written by and shared with permission from Shannon Wieloch, MS. Shannon is a certified genetic counselor and patient advocate for the Aicardi-Goutiere Syndrome
Heal Canada Releases 5th Issue of E³ Advocacy Digital Magazine
Patient Worthy collaborator Heal Canada has recently released the 5th edition of its digital magazine E³ Advocacy—Empower, Engage, Educate. This publication is dedicated to sharing
Discovery of More Compact Cas Protein Heralds Progress for Gene Therapy
Researchers discovered a version of the Cas protein that fits into adeno-associated viruses (AAVs). This virus can be engineered to deliver targeted therapy to cells
Rare Community Profiles: He’s Only “1 of 20,” But Jonathan Cappiello’s Impact Extends Much Further
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families,
